Help and Hope for the Glut1 Deficiency Community

Jones Family video

November 15th, 2017

We are very grateful to the Jones family for allowing us to share their story.  Their son, Reece, is one of the 10% of Glut1 Deficiency patients who doesn’t have seizures.  They also share details of the successful use of a feeding tube to manage the ketogenic diet.   Jones family video

Fall 2017 Newsletter

November 13th, 2017

We are pleased to share our Fall newsletter at the link below.  It has been a busy time for the Glut1 Deficiency Foundation and we have lots of news to pass along.   Fall 2017 Newsletter

York Family Video

November 4th, 2017

We are honored to share the York family’s video – a powerful story about persistence and perseverance and following your instincts. This is the third in our series.  Thanks to all of the Yorks for sharing their journey and to Rob Rapaport for capturing it and putting it together on film. York Family Video

Glut1 Family Meeting in Argentina

November 2nd, 2017

We are thrilled to share news of the second family gathering in Argentina. 

National Disability Forum Invitation

October 26th, 2017

  We are very happy to have been invited to take part in the Social Security Administration’s National Disability Forum on Compassionate Allowances and Rare Diseases.  You can participate in the forum through teleconference and by submitting ideas and questions.  Please see the invitation below for more details.         You’re invited! Please register here to participate in Social Security’s National Disability Forum,…

GuideStar Platinum Seal of Transparency

October 9th, 2017

  We are pleased to share that the Glut1 Deficiency Foundation has earned the Platinum Seal of Transparency from GuideStar, the highest level awarded from the world’s largest source of nonprofit information. We’re proud to use GuideStar Platinum to share our full and complete story, showcasing the progress we’re making toward our mission and the results of our work!  Check out our profile at the…

2017 Conference Summary Report

October 6th, 2017

We have the conference summary from our meeting in Nashville ready to share. Kris Engelstad put together the presentation notes, the presenters reviewed them, and we have compiled them to share. We appreciate their help in providing this wonderful resource. 2017 Conference Summary Report

KetoCal Webinar with Stacey Bessone and G1D Foundation President Jason Meyers

September 20th, 2017

Join KetoCal on October 5th for a free parent Webinar on adherence with the ketogenic diet! Learn tips for staying on the ketogenic diet from dietitian Stacey Bessone and Jason Meyers, a parent of a child on the ketogenic diet. Register now!

Rebbecchi Family Video

September 12th, 2017

  The second video in our series is ready – a story that highlights some of the early signs of Glut1 Deficiency and the tremendous difference a diagnosis brings. Sincere thanks to the Rebbecchi family for sharing their story and to Rob Rapaport for putting it together on film. Rebbecchi Family Video

Summer 2017 Newsletter

August 27th, 2017

The most recent edition of our newsletter is available at the link below. There are lots of updates to share! You’ll find conference resources from our gathering last month in Nashville, plus information on plans we are already making for our next conference in 2019. There are also some details on new research projects, family news, G1D Foundation news, and some information on our plans to…